Starting chemo August 2014
Comments
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Jean, your ggd is so adorable. Love the pic.
Catie57, I am also trying to get into a regular routine for exercising. My husband bought me a fitbit to keep track of my steps if I don't get a formal exercise in every day. I am doing pretty good with the 20/30 min walk a day either outside or go to the gym to get on the treadmill. I plan to start weight training in mid-April after my RADs are done as I am very sorry in the radiated area. I have lost 5 pounds since starting RADs. Think it is more water weight though as I did begin to "splurge" when my taste buds recovered and now backing off a bit. Especially on the not so good stuff. LoL!.
Beatmon, welcome home and sounds like you and a wonderful time! I told my hubby I wanted a cruise this year. He said plan for Sept. So late March/April we go to Las Vegas, July our yearly family vacation to Disneyland and Sept a cruise. I am so looking forward to these times. Seems like my life has been on hold this past year except drs appts, treatment appts, work, then bed – just to start the cycle again. Lol
CassieCat, I was also put on Vitamin D during Chemo and will start again after Rads.
Gatomal, posted my Taxol experience on the weekly Taxol thread. Taxol was not nice to me and still feeling the SEs. The MO said I could experience this SEs for 3-6 months
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JustAmy, I did the same thing and thought hummm nobody posting since I didn't get an alerts, which I thought was unusual since we are still pretty active. Well came to the site and I was a few days behind. LoL. That darn iPad.
Bippy, I believe we need to share the good, the bad, the ugly and the hideous. As we know each individual reacts differently and we don't know what to expect. I believe it is good to understand the gammit. That is why I share my "rare" experience on the Taxol board. I usually put I disclamier in (which I believe you did too and others) by saying I am one of the rare ones that Taxol was not friendly too. I was glad that there were those that came out of the woodworks about the bad reactions to Taxol when I begin to ask questions. Otherwise I would have freaked out. LoL.
Nurseshark, two weeks already? Glad you have your Mom. Mine has been just awesome during this entire journey.
Gatomal, my hat is off to you! Taxol was hard on me and understand the "level" of fatigue and other SEs that just zap you. I am also one that wanted to "feel productive" but let go as Taxol began to kick my butt to say it lightly but I don't have near the responsibility you have. I hope you are able to find good help as you move forward with Taxol and prep for surgery.
As Always hugs,
Angie
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Just finished 3 weeks / 15 treaments of Rads today. I little over 2 weeks to go or 11 treatments. I am beginning to feel pain under my arm and around my clavicle area. My throat is also sore which is an SE of being radiated in the clavical area. Shoulders are taking a beating due to the position. I was given a PT appt. Oh wait a wonderful PT appt it is was. I have to say it felt so good to get stretched, massaged and stretched again. Because of the Lymphedema and soreness from Rads I get a PT appt every week (big smile) through the end of March and monthly there after until the Lymphedema is under control.
Fatigue continues to follow me. I believe that is why I am just not able to "take" any additional pain, soreness, etc. My body is hollering "stop it already". But then says let's beat the this cancer. I respond we already have and going into maintenance mode to ensure it stays away. Yes I talk to myself and even answer. I find it soothing, relaxing and takes away the anxiety. This is a skill I have learned through this journey. (BIG SMILE).
The hair on my head has begun to grow and not just fuzz. I didn't expect so much 5 weeks PFC. No eyebrows or eyelashes yet but I lost those pretty late during the Taxol treatment. I will need to post a picture. Still interesting that I have a lot of grey and didn't have any before chemo.
Best thing -- my taste is back. Loving it but as mentioned earlier cut back - but that was after I caught up on all my cravings. My tummy was in heaven.
Ok, now I am done. Guess I needed to catch-up from being away. LoL.
TGIF,
-angie
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Taxol was brutal to me immediately. I ended up in the ER the first treatment and couldn't do it. Then they gave me taxotere... Taxols cousin and I am still getting over the SE's from it 2 months PFT. Red Devil didn't do anything to me compared to these two!
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Quick note to say I am pretty sure I see some new upper eyelashes coming in! Woo hoo!!!
My hair's growing, my brows are filling in, and now there's hope for my lashes. 0 -
I finished Taxol on Jan 20th and lashes,and brows,fell out in the last few weeks. So now I am bald, eyelash and eyebrow less! Starting rads March 16th if there are no unforseen delays. I am so ready to get on with my kife. Love, Jean
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NurseShark - Hoping each day gets a little better for you during recovery from surgery. Glad the tubes are out.
Gatamol - I wouldn't suggest the hills during chemo. I couldn't get up the driveway to mailbox without aches, and breathing heavy. Just a slight incline. It took a little while to get back, but you do come back... So give yourself a break during this time.
Heading on vacation tmrw, all packed up and ready to escape this weather. Going to hit zero tonight here.
Colored my hair today. The grey didn't cover so well, so had to do it twice. Too short to get done at salon. I plan on going hatless on vaca but wish it was just a little longer.
Hang strong everyone
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Bippy it's not right to be reprimanded for being honest about your experience. That's nuts! Don't scare the newbies? Our docs are the ones who downplay SEs we are the ones who should be able to be honest about what's going on, so we can help each other. This whole thing is scary, but forewarned is forearmed, and we all know that not everybody gets everything re SE. There really are a few boards out there who have posters who seem to own the board. Annoying.
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i can see my bottom lashes clearly, though they are yet half the length. Can't see much of top ones but that may be because of the angle. although i admit i tried to pull up my eyelid so i can see
i had full curly lashes before and really miss them, tired of putting eyeliner for work. My hair has started to look fuller, but it is very short, 1cm i would say. wish it got longer quicker. i'm using the FAST shampoo someone recommended in the hair thread but pretty sure it does not work 0 -
I agree with Gatomal, honesty is the best policy. How else are we to help ourselves and others? I lurk & don't usually post on this board cause I'm stage IV. However, the reason I lurk is I can learn from everyone regarding s/e from the various chemos and how to address and/or reduce them. Since I will most likely be on chemo for the rest of my life, this is so important. I have learned so much from these boards & very little from my oncologist. They looked at me like I was crazy when I ice my hands/feet during taxol, but I never lost a nail after nearly a year on it!! That was important to me because I had my daughter's wedding to attend and wanted to have my nails!! Regardless of the wedding, I did not want the pain associated with the nails coming off (one small example of what I've learned from these boards). Although I still have neuropathy, I feel it may have helped lessen it.
So, please, don't be intimidated by anyone on these boards. If something is inappropriate, the mods will address it. Speak freely and openly because that's how we help ourselves & others!
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Cathie 57= Have fun. Hope you are going somewhere super warm. My hair is too short to go hatless. It is about 1/2". I dyed it myself 2 days ago. It was all white/black. I picked a deep brown and now it is a light red. What is that about? My boyfriend dyed it for me 2 weeks ago and freaked out when the color looked purple. So,we washed it out too early and I was a creepy salt and pepper.
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Today is 6 months since I started chemo. Hard to believe how much I've put my body through in 6 months, but it seems to be hanging in there with me. I'm bummed that at over 2 months PFC I'm still dealing with these sore fingernails that are lifting and hurting. I wish I'd iced throughout, in hindsight. My MO and nurses don't talk about icing at all, and I wonder why that is. I've finished 12 of 28 rads (and then 7 boosts). Bippy, I think it's OK to share our experiences. If I manage to get through rads with few bad SEs I'll be posting about that, just like you needed to post about your experiences. And if it does get bad, then I won't be shocked, and I'll know that there are others out there who can relate and maybe even offer suggestions. That's why we're all here. Can you ladies imagine if we had to hold back on posting about our chemo SEs? How would we have gotten through it all?
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Cassie, I am 6 months out from first chemo, too (August 25.) wow...half a year! Something to reflect on...how I have changed and grown. I hope I have gained wisdom and live life with more grace, as I can never know what someone I meet is going through. Thankful for this August chemo group. I have learned tons from your experiences and so appreciated all postings, questions, concerns, rants, please continue to share, my friends!
18 rad treatments down...12 to go. Quite rashy and red in the area between the tattoos. So far using aloe only. Probably will see more irritation. Nice staff at my center.
I have eye surgery scheduled in March. Need permanent tubes to replace my destroyed tear ducts. Taxotere has blessed me! Perhaps my excellent eye plastic surgeon will give me a more youthful look!
Question for lumpectomy gals. I had some fatty tissue put in my breast to replace the lost tissue. This area of my breast is still very hard, and skin has a significant fold below the nipple. Looks pretty awful. Any others have a similar experience?
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The amount of knowledge and support on any of these boards is amazing and if somebody doesn't like the post being posted -- don't read it!!!!! Newbies really need to know what the worst case scenario could be to hopefully prevent some of the experiences that Bippy and Jean have gone through. And our friends, need our help and support as well. How is your job Bippy? Do you like GAL work? Jean, you out there??
Gosh, ladies, I can't believe it has been 6 months since starting chemo. I didn't lose fingernails, but I do have the wrinkling fingers. They look to be about 80 years old. There is no amount of hand lotion that helps, but I do smell good all the time.
I am going to get to take a vacation this year!!! Last year, I was a little busy -- surgery, chemo, radiation, doctors, doctors and more doctors!!!! Where to go, what to do, the first week of May. Any suggestions?
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Hey gals. I am 9 days post surgery and doing well. Full range of motion and a little sore but no real pain to speak of.. Hope my drain is pulled on Tuesday then on to rads. We sure are kicking cancers sorry butt! Thank you God for strength , courage, healing. Amen.
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syrmom, hugs to you. Hope some info has heled. I'm still taking l glutamine 30g per day, folic acid, and b-6 each day for neuropathy. Anecdotally recommended by Ucsf, but only if you ask them, not freely given as advice. I have gel booties and gloves for taxol, and if you like I'll send them to you for icing during taxol. I have two sets, pm me if interested.
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Gatamol: what are the gel booties and gloves for icing? I have a friend starting chemo soon
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I bought these for my hands
http://www.amazon.com/gp/aw/d/B000URFIJ6/ref=mp_s_a_1_6?qid=1425171298&sr=8-6&pi=AC_SX110_SY165_QL70&keywords=gel+booties+cold&dpPl=1&dpID=41nZCBX5rFL&ref=plSrch
And they have foot ones too. Most folks just use ice bags, frozen vegetables, or an ice bag and alcohol slurry. I use latex gloves and thin socks to tolerate the cold. It's generally used for taxanes, to prevent nail loss and/or neuropathy, although neither has been proven. I haven't had problems w my nails lifting or being painful, just with thickening skin, and so far, I think i have escaped neuropathy,although I'm not sure if my carpal tunnel hasn't cleared in my hands, or if it is in fact neuropathy.
Icing is supposed to be started 15 min before taxane infusion, duration of infusion, then 15 min after. I can only tolerate it during. I bought two sets of gloves/ booties so we have max cold as they get pretty warm adter 30 min, which is when I switch
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I, too, take L-Glutamine and a B-complex that contains B6; I learned about the L-Glutamine on these boards - so very important! Had I been more diligent, I might have avoided neuropathy all together. I'm very diligent now, so hopefully it won't worsen. Most all of the chemos have the potential side effect of neuropathy, some more than others; such a quality of life issue!!
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How soon before the first chemo should I start taking L-Glutamine? Does it need time to build up in the system, or should it be taken only on the day I start treatments? I start the day after tomorrow by the way.
Also, I'm a little confused about the icing of feet and hands. My chemo nurse said that in order to avoid neuropathy, I should make sure my hands and feet never get cold. She even said I should use gloves when taking anything out of the freezer or even fridge. These are two extremes. Am I misunderstanding something?
Thank you,
BB
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I took l glutamine and b complex starting the week before taxol.
As for icing hand and feet (I didn't do) you do it during infusions to help stop neuropathy from happening. If you develop neuropathy you should be careful to avoid hot/cold extremes because your can't feel how hot or cold things are you could burn self/ or frost bite without realizing.
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thank you for the support, so glad to have understanding. Ido always preface my posts there with the fact that I am NOT in the majority, most have minimal rad issues. I agree it is vital we post our real experiences--good, horrid, whatever. Certainly, our docs do not tell us the full picture. I am so grateful to have learned from another unlucky rad lady, and showed pics of her own awful burns. She and I, burnt crispy. As my black, dead, leathery skin sheds, I pray for all doing rads for minimal SE.
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i also appreciate hearing the truth about se ...every one ( those who have never gone through treatment /and some who have!) keeps assuring me that rads...will be "easy" part after chemo and surgery..... I am personally dreading it. I was reassured that surgery would be "easy" after enduring chemo....not quite sure I have same definition of the word easy
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I feel like I'd rather know the range of SEs possible for different things and then I'd feel prepared. In terms of the actual treatments, going for a ten minute daily rads is easier than going for the 5 hour chemo every three weeks. Two and a half weeks in, rads has been easier than chemo. But, I'm not kidding myself that it isn't going to get worse over the next 5 weeks. How could it not, if I'm already starting to see signs of my skin changing (albeit mildly and in a completely tolerable way)?
I've been reading about recon after rads and I'm not feeling so hopeful about my chances for it being successful, even though my surgeon seems fully confident that I'm a candidate for it. Not something to worry about today.
BBwithBC, I think NurseShark explained things pretty well. I was talking about icing my nails during Taxotere to avoid the nail damage. I don't think I have any neuropathy.
Does anyone else have peeling fingers, or wrinkly fingertips?
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My fingers started peeling about the last treatment of taxotere. They are getting better. My nails look much better...they are no longer black...but they still have lines through them.
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JustAmy, I am still feeling Taxol SEs also. One is insomnia
which you can tell by the timing of this posting.Cassie so agree, one of the things we are not told is how long SEs would last after PFC. I asked my MO as I was concerned after 3 weeks that I was still so tired and the other SEs were still hanging around. She said 3-6 months. Wow was all I said.
Cathie, have fun! I hope you get to relax and get spoiled. I am also considering dying my hair. I have to say I love my black/silver grey combo.
Cassie and Windgirl, Woot, Woot. Last week I couldn't see any eyelashes or eyebrows. Low and behold today, I looked in the mirror and noticed a shadow -- the shadow was actually my eyebrows coming in. I also see my eyelashes beginning to emerge. Happy Dance.
All, so agree with you. Sometimes when I see the "rare" SEs I get a little anxious like I did on the RADs board but was so glad they posted the range of SEs so that we know. What we post is to help all currently going through treatment and those yet to come who may or may not post to the threads. I found it so helpful to just peruse threads that I believed helped me. I also remember when several of you searched and found post regarding my eye issues.
Syrmom, ditto, ditto, ditto! Couldn't have said it better. Thank you for posting. I brought things up to my MO or the Onc Nurses that I found on these boards that she may not have otherwise mentioned.
3 weeks into RADs my skin is darkening, fatigue and a soreness underarm. RO says the soreness may get worse so be diligent with taking care of skin. I am using aloe vera, caldula (sp?) ointment and aquaphor. Trying to be consistent with exercise routine to combat fatigue.
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RO prescribed a special mouthwash for the sore that that is coming from RADs to my clavical area. Hope to get a better night's sleep tonite without sleep aids.
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Well, we have all been through some hard times together. I am feeling so much better now, my rads burn healing very quickly. nearly human once again.
I appreciate the support re: revealing all the truth about tx. It sure helped me reading others experiences, getting ideas my onc never heard of, and learning what they do not want to tell you.
Thinking of really moving on, mentally. Gonna heal for next two weeks, then pursue working temp. For the first time in forever, feeling happy, grateful, and a need to forget about BC for awhile. I am working on a bucket list, things large and small. How incredible it feels to be able to move my arms again, and cook a new recipe from scratch. Bought a few nice cookbooks and trying them out
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ladyB hope you get some relief from the mouthwash. What a strange thing to experience from rads, I'll be on the lookout for it when I get to that stage.
Bippy...I hear you sister. Take a mental break, recharge and get back to your life. BC 24/7 gets old quick. I'll miss your posts when youre gone. Come back and say hi!
Today my scalp is hurting, I am totally worn out, and want to get through tomorrow. I have my first mammogram since I've been Dx, and just feeling apprehensive about what new info I may find out. Hope that I don't find that my lumpectomy turns into a mx, for instance. I also have my last chemo tomorrow (I hope) if my neutrophils are high enough so fingers crossed. Chemo has taken me forever, right?
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Gatomal: you have to do a mammogram so soon after lumpectomy!? Breast mri wouldn't be enough ? Oo I am so sorry I can't imagine being smooshed so soon You are one tough chick. I am sorry this is going so slow for you. I hope the babies are doing great. Ill be praying for you tomorrow!!! Last Chemo !!!!Finally!!!
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